Just dignosed but my mammo was clean 9 month ago.

Birdie18
Birdie18 Member Posts: 2
edited August 2021 in ILC (Invasive Lobular Carcinoma)

Hi

I've been getting mammo every year and it's been always came out negative. Last one was done 9 month ago and was negative ( or maybe they didn't catch it) But I felt a lump a month ago and it turned out to be an ILC.on Right breat, 4cm. Stage IIa, Garde 2.

I read that ILC is harder to be seen on Mammo than other type of BC..Was it true for you? I just met with PS and BS. So many information to take into consideration and I'm still having hard time deciting what to do with my left breast.. DM or UM?. Please share your experience.



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  • Moderators
    Moderators Member Posts: 25,912
    edited July 2021

    Birdie - Welcome to Breastcancer.org. We are so glad that you reached out to join our Community and share your story here with our members. We're sure some will be able to help and give advice and support to help you make the best decision. Until then, please let us know if we can provide any assistance to you as you find your way around. We are here for you!

    The Mods

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  • Dani444
    Dani444 Member Posts: 522
    edited July 2021

    Birdie- I will second what the mods said, I am glad you have joined this community. So much information to learn here. It is so overwhelming at first and it really does get better when you have your plan in place. I totally understand that getting there can be a lot. Getting a prophylactic mastectomy on your other breast is such a personal decision. Take the time to talk in detail with your breast surgeon about the risks/ benefits. I also found my nurse navigator tone helpful when making decisions.

    As you can see in my info below I went back about a year and a half later to get a prophylactic mastectomy to my healthy breast. My first mammo after cancer came back as a BIRADS 4c and I needed a biopsy. It was benign, but I couldn’t handle the emotional side of it. I spoke in length with my breast surgeon and she agreed that even though it doesn’t affect my overall survival that it was reasonable to get the mastectomy. I had direct to implant with my first UMX but ended up needing rads due to positive nodes. I say that because getting good symmetry has been a challenge in my case. These decisions are so hard and I am sorry we have to deal with any of this. I know others will be along to help. We are here for you.

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  • DutchieGirl
    DutchieGirl Member Posts: 103
    edited July 2021

    I didn't have ILC but my mom did. It was not detected through a mammogram, though she did have one about nine months before diagnosis. My mom's nipple started to invert. It did not present as a lump. She opted for a single mastectomy and then read that ILC has a higher rate of bilateral spread. At her next mammo (of her remaining breast) calcifications were noted and she asked to have her breast removed. Her surgeon agreed. That was 23 years ago. It should be noted that my mom was stage 3C and she is alive and well. She will be 81 next month.

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  • Birdie18
    Birdie18 Member Posts: 2
    edited July 2021

    Dani. thank you for sharing your story.

    I just had a follow up appointment with my BS

    Both my dr and I agreed that the surgery is needed asap on my right breast since my lump has grown so fast. Dr said it takes longer to schedule a DMX with immediate recon. So I’m going for umx so I can start treating the cancer. Now I feel little better. At least the first of many decisions has been made. I might ends up with asymmetrical breast but my health comes before beauty at this time Besides my PS sounded very confident about matching my breasts if I choose UMX.

    Thanks and please pray for a fast surgery date!

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  • beth1965
    beth1965 Member Posts: 455
    edited August 2021

    hi there I had 9.2 cm tumor that did not show up on mammogram or ultrasound. You could actually visibly see and feel the lump but wasn’t showing anywhere. Also had had mammogram for previous 7 years or more never showed even though they said growing for awhile since I had large tumor and 17 positive nodes.

    Lobular presents itself differently or I guess better phrased it doesn’t present itself at all it hides. So many woman with lobular have the same story many like myself with undetected large tumor and nodes. Most of us not found early.

    But many including myself have fared well and are long time survivors so apparently woman can be stronger than ILC. Learning about it and asking questions like your doing is helpful it definitely helped me just being on this site. Lots of great people and information here. ❤️ Beth

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  • wallycat
    wallycat Member Posts: 3,227
    edited August 2021

    If you do a search on my screen name, you can find my saga. Yup, clear mammograms for nearly a decade, even the DAY I was dx. Nothing but an MRI picked up my cancer, and even that did not look spiculated an cancer-like.

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  • moth
    moth Member Posts: 4,800
    edited August 2021

    Even IDC doesn't always show up. Several months after a clean mammo I had a palpable lump.

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